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Follow-Up Care

digger
Posts: 5
Joined: Nov 2003

Hello and thank you in advance,

Re: Diagnosed with stage II renal cell carcinoma in 2000, had radical nephrectomy.

My physician stopped providing follow-up care for this in 2005 because he said that I had hit the five year mark and the cancer is guaranteed not to come back now. It has been two years since I have had follow-up testing of any kind and I have to say this doesn't feel quite right to me. Is this normal procedure?

Thanks for any comments.

Dig

trishpm
Posts: 22
Joined: Nov 2004

Dear Dig,

The bad news: Your physician is wrong. Rarely, kidney cancer can return in another body site many, many years after nephrectomy--there have been medical reports of this happening more than 20 years after a kidney was removed. It is rare; the chances that it will happen to you decrease with time passed.

The good news: when kidney cancer returns after a long disease-free interval, it often returns in just one or two places that can be successfully treated by surgery--if it is caught early.

It is imperative that you continue to have checks for possible return of kidney cancer for the rest of your life, at minimum, chest x-rays (because kidney cancer most often returns in the lungs) and renal ultrasound every couple of years to check for local recurrence. You should also investigate promptly any signs or feelings that all is not right with your body.

See http://cancerguide.org/kofaq/ to join an email support list specefic to kidney cancer.

digger
Posts: 5
Joined: Nov 2003

Trishpm,

Thank you much for the reply. What you say makes a whole lot of sense, and I guess my biggest fear is that I've gone too long without proper follow-up. However, I have recently changed primary care physicians, and will inform my new one what I expect as far as follow-up.

Thank you again for your response,

Dig

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I was diagnosed with Stage I RCC in 2001 and had a radical nephrectomy. Had regular followup with all tests and, 3 months before my 5 year 'anniversary', it reappeared in the right lung. Had 1/3 of my lung removed a year ago and now they're watching my liver function tests. There is no 'get out of jail free' card with this disease. You need to be followed for waay longer than 5 years.

digger
Posts: 5
Joined: Nov 2003

I can't tell you how much I appreciate all of your advice. And you couldn't have been more right. I found a new primary care physician who takes my cancer follow-up very seriously. He immediately ordered a CT scan for me which unfortunately found a nodule on my left adrenal gland. If it turns out to be cancerous, it would not have been found without your suggestions. Let's hope it's benign, but that wouldn't be my luck lately. Thanks again.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Thank GOD you changed doctors when you did! And I will pray that the results are negative. Had I not had such diligent doctors who (in my opinion at the time)were being overly cautious with the extensive followup, I could be in serious trouble right now(if not 'not here at all')! Keep on keeping on and stay positive. Even with recurrences, many times it will be operable and sometimes, even, treatable.

MShoe
Posts: 1
Joined: Nov 2006

I was diagnosed with Stage 2 RCC in 2004. They removed a 10 cm tumor contained within my kidney. AFter a redical nephectomy, they told me my chances of it returning was slim as it was a chromophobe tumor. I am currently having achiness in what I call my "kidney hole". I go in a few days for my yearly CAT scan.

rhonda123
Posts: 3
Joined: May 2007

My tumor was contained as well, all lymph nodes negative. {thank you}.. I have my follow-up appt Tuesday. Took the cat scan and had chest x-ray...now for the results..... How do you get thru the day before the doc appt? and in my heart of hearts i think all will be fine... But believe me, I will never miss a follow-up appt. This is to scarey.

KCFighter's picture
KCFighter
Posts: 50
Joined: Jan 2006

I was also diagnosed with stage II renal cell carcinoma. I had a radical nephrectomy in 2006. I recently had my 8 year check up and all came out good. However, my doctor has only done chest x-rays and blood work for the past 3 years. It concerns me that I'm not getting any imaging that focuses on my remaining kidney and also the spot where my right kidney was. On my original diagnosis, my blood work was normal then too so I don't feel the blood work is reliable and chest x-rays are only looking at my lungs.

My 8 year check up was just in April so I don't have another follow up with my kidney cancer specialist until April 2015 but I am thinking about asking my regular family doctor to order an imaging test sooner. Considering that I am 8 years out, but have not had any real imaging tests since my 5 year mark, should I ask for a CT scan w/contrast or an MRI or other imaging test?

Thank you in advance to my fellow survivors!

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